When Clare reached out to me to post her allergy story I was really excited. Usually when you do a guest series its a nervous time of asking and hoping people will agree so for someone to ask is always an honour. Her story is one i know only to well with a struggle to get diagnosed and feeling like your not being listened to, one thing i have learnt is that a parents instinct is often right and you know when something is wrong with your child. Please show Clare lots of love for being so honest and heartfelt with her journey.
“She is allergic to something, you’ll find out one day”
That was our ‘advice’ from the GP when our baby was breaking out in hives all over her body at 8 months old. This was the first indication that she may have allergies. Ever since being 12 weeks old she had terrible skin and tummy/bowel issues which impacted terribly on sleep. We had spent a good number of doctor’s appointments going through new creams to see which combination would help. Looking back this was, of course, not very helpful advice.
At 15 month’s old it happened. After a bite of a peanut butter sandwich she immediately went into what I now know is Anaphylaxis. She was covered in hives with skin hot to touch, her face was swollen, she was screaming, her eyes and nose were streaming and she projectile vomited. She was clawing at her skin whilst grabbing me to hold her. Luckily this self-resolved after a couple of hours or it could have been a very different. I took her to the doctors and was reprimanded for not seeking medical help. I was lead to believe it wasn’t a big thing with the nonchalance of the original doctor. Hindsight is a wonderful thing though, right?
She was given an Allergen Specific IGE blood test (IGE = Immunoglobulin E) and was tested for peanuts, Brazil nuts, Almond and Hazelnuts. These were all positive. Looking back although reality was setting in, I took this in my stride. We were told to avoid all nuts and sent away with antihistamine. The eczema and stomach issues didn’t resolve. I repeatedly returned to the doctors saying ‘there must be something else’. I was told it was childhood eczema that would get better as she got older. As time went on she would have more and more reactions. I went to the doctors literally weekly to beg for more testing, eventually being granted my wish. This time for dairy, egg, tomato and chickpea. Again, all positive! Our advice this time was to remove the foods from her diet. No referral to a specialist or dietitians. Nothing. That evening after putting her to bed I sat on the sofa and stared into space. Then I sobbed. HARD. I cried for the life she knew being no more, the ‘normal’ childhood she would no longer have, the ice creams she couldn’t have at the beach (we live by the sea), it wasn’t fair. Truly wasn’t fair. What had I done wrong? Had I eaten the wrong foods when pregnant? Had a terrible lifestyle? Was it because she was mixed race? Yes really I questioned that. I went to the doctors to request a specialist referral and also Adrenaline Auto Injectors (AAI). I was refused both. The latter due to living in a city. Now I don’t know about anyone else but I’ve seen ambulances trying to fight the traffic to attend emergencies and it isn’t quick! I eventually spoke with a different GP on the phone who asked why I didn’t have AAI. Erm…what have I been repeatedly asking for? I also got the referral to the allergy clinic. It had only taken 2 years.
So now we had AAI and a referral. It took 8 months to be seen, the clinic is so busy. We saw the consultant and had skin prick testing. The tests included Peanuts, cashews, dairy, egg, chickpea, sesame, cat, dog and dust mite. Guess what??!! All positive. They also gave us the news that due to the number of allergies that she would probably never grow out of the peanut/nut allergy. The allergy clinic had given us answers and now we needed to move forward.
Our lives had changed. I say ‘our’ as allergy doesn’t just affect the person who is allergic, it is a far reaching net. I’d like to say it doesn’t take over, but it does. For a while at least until you are accustomed to the lifestyle that nobody would ever ask to be a part of. So, it began…label reading (not just once but EVERY time – makes shopping a very long process), telling friends and family and educating them on signs and symptoms, giving them AAI training, late night food prep for parties, outings. Contacting manufacturers about their food. Food labelling has always been a bit of a minefield for allergic people. In 2004 a fellow allergy mum and I had a labelling query with a well known supermarket, they couldn’t tell us the risk for a product that they had put a ‘may contain nuts’ label on. A petition ensued to ask them to ensure their products follow the EU Food Information for Consumers Regulation guidance that ‘a may contain label is only used if a demonstrable risk is present’. This gained lots of interest and almost 30k signatures in a few days! The support was huge and we were able to get the supermarket to check and change over 500 labels!
Fast forward to 5 years old and it was time for our annual check. This time the test showed no reaction to cow’s milk. Hooray! Due to a couple of accidental exposures and this test result she was booked for a food challenge. This is where they feed an allergic person small amounts of their allergen in a controlled environment. It is the gold standard for knowing whether you are allergic. It isn’t the gold standard for feeding your child something you know could harm them. It was a baked milk challenge. This was in the hope that if we could reintroduce cow’s milk in a cooked form her body would get used to the proteins and eventually tolerate it. I cancelled the first appointment as I was just too petrified. I will say it again -It isn’t a natural progression to knowingly feed your child something that could potentially end their life. The day of the challenge arrived and we were all hopeful. We were dealt with by a lovely nurse who explained everything. A small amount of the cake was given every 15 mins and her vital signs were monitored after each dose. For the first three doses, all was fine. It was after the fourth dose that a cough started. Her airways were being affected. The cough was a short, irritated cough that quickly became more urgent. She had no outward signs – no rash, swelling or redness. Before I knew it the nurse had turned into two nurses, the curtains had been thrown round and I was being told to administer her AAI. The nurses held her still, I gave her the pen and she SCREAMED. It was blood curdling. Two allergists and an allergy nurse were at our side in minutes. We were in the best place but it was terrifying. We had put her in this situation! She responded quickly and her wheezing slowly subsided. We were monitored for hours, which is usual after the use of adrenaline. She was given steroids to take for a few days to stave off a secondary reaction. Well, that wasn’t what we were expecting! I had some sweet tea, given by the lovely nurse. I had never been so happy to drink tea. I can’t fault the hospital, the care they gave was phenomenal. As she had consumed milk until she was two, she has been called an ‘interesting’ case now being anaphylactic. It seems that removal of the food has caused her body to rebel against it even more. The allergists have told me they now know if you remove a food then you should try and reintroduce after 6 weeks to prevent this very thing from happening. It is known as ‘mind the gap’. This is of course not recommended with people who have suffered previous anaphylaxis. Sometimes hindsight isn’t so wonderful hey!
She has never known any different so in that respect we are lucky. A complete star, taking it all in her stride. She recently visited a family member of a school friend. When they offered them chocolate, her response was ‘I am not allowed that as I have allergies, but I will write you a list of what I am allowed for next time!’. I love that she has the confidence to do this as the social and emotional impact of food allergy is a big issue.
When it comes to me, I have struggled with anxiety surrounding her allergies. The What if’s, paranoia over new foods, struggles with ever changing food labels and the exhaustion due to being hyper vigilant ALL OF THE TIME. I have taken comfort in a few ways, depending on how I am feeling. Prayer, education and the online community I have found have all been invaluable. I can truly say I have made friends for life from the online forums. They just ‘get it’, you don’t have to explain and you can all celebrate the wins because you know how it feels.
Unfortunately due to a combination of things she now has a needle phobia that has developed. This has resulted in a lack of tests for the past couple of years so we are a bit in the dark with her allergies. Again, the hospital have been amazing in putting Play Therapy in place to help her overcome her fears.
Despite our winding and rocky road we have a funny, energetic, loving and clever little girl who amazes us every day. I wouldn’t change her for the world, but I would change the exhausting process we went through. Living with a loved one who has allergies is tough. It affects everyday life like you wouldn’t believe and probably wouldn’t understand unless you’ve lived it. I think the saying ‘the gift and the curse’ sums up the allergy life perfectly.
Some snippets of advice!
1.If you have an allergy, they can be unpredictable. You should carry TWO Adrenaline Auto Injectors. Insist the doctors give you two, they can misfire or not be enough.
2.You need to take control of your own destiny – sounds dramatic- however you can be fobbed off which could lead to terrible consequences. Shout from the rooftops if you need to!
3.It will get easier, you will have good times again.
4.Educate yourself…BUT…don’t get bogged down in horror stories. It’s easy to do but won’t help.
5.Learn what to do in an emergency and have a plan. Always have a plan.
6.You CAN travel, you just need to prepare differently to others. We have flown long haul to Southern Africa and spent weeks there without any issues. You will need to tell your travel insurance, make sure you are covered for anaphylaxis and airlifting to appropriate medical care, or repatriation home should you need it.
7.Enjoy life, it is all too easy to get stuck in a rut of worrying but this will rob you of good times as you will not be ‘present’. Come back to the here and now and breathe. Life is beautiful.
8.Read food labels EVERY TIME. Manufacturing processes change as do recipes. This is so imperative.
9.Carry your Emergency medication. Always, everywhere. I have a post it inside the front door to remind me. If you forget it, go back. If you leave it somewhere, get more. Just don’t be without it.
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Clare has kindly offered her email for advice to anyone newly diagnosed, struggling or if you just want to scream at someone who understands – firstname.lastname@example.org